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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie here!
        
(Message started by: Capt_Deb on May 30^th, 2006, 2:41pm)

Title: Newbie here!
Post by Capt_Deb on May 30^th, 2006, 2:41pm

Hi everybody!
Capt Deb here. I'll tell you a little about myself. I'm 55 female, formerly very active sailor, windurfer, hiker kayaker. 3 1/2 years ago I was diagnosed with an acoustic neuroma--had brain surgery out in LA. 10 days post -op severe headache doc said I'd had a migraine. Pre-surgery I'd had a few really bad headaches, but nothing like this one. By 6 months post-op I was bedridden with these things usually waking me up in the morning, but sometimes in the middle of the night.
My neurologist persued a CSF problem for over a year and cluster headaches were never mentioned. Secondary diagnosis of chronic migraine disease. I don't think he ever asked about the extreme agitation I went through, or the tearing and nose running. I seemed to drift in and out of these things doing, oh so much better and then relapsing.

In addition to the acute attacks, I get bad exertion headaches. My last visit elicted yet another diagnosis (tenatively) of "hemicrania continua" and researching this I found out more about clusters. My last AM headache I finally used the injectible Immitrex, which actually is the only thing that has ever worked at knocking one of these suckers OUT. Hence my research into clusters. I've been on quite a few "preventatives" including Verapamil, Topamax (which made me psychotic) Inderal--hated the side-effects of all of 'em!

Anyhow 3 years and still no definite diagnosis. Anyone here ever have these triggered by brain surgery? I lost my hearing and balance nerve from the surgery on the same side as my headaches are. I'm on another support forum for Acoustic Neuroma survivors--alot of us suffer from seemingly endless headaches and our neurosurgeons are no help--they just pop 'em outta our heads and send us on our way!

Anyway, that's my story and I'm stickin' to it!
Capt Deb 8)

Title: Re: Newbie here!
Post by marlinsfan on May 30^th, 2006, 3:56pm

Welcome, Captain! Even tho you're a Cap, grab an oar and row with the rest of us, will ya?

I'm sure you've seen this, it has good info on meds. Read all you can, there's lots to learn.

http://www.brightok.net/~mnjday/chtherapy.pdf

PF wishes.
Jose

Title: Re: Newbie here!
Post by Jasmyn on Jun 1^st, 2006, 3:19am

Welcome Captain Deb :)

On this site there is a wealth of information. I do hope you get a definite diagnoses soon.

Title: Re: Newbie here!
Post by unsolved1 on Jun 1^st, 2006, 2:28pm

Welcome Capt ! :)

Glad to hear the Imitrex jab worked for you. Stick around a read up, ask questions

Goodluck
UNsolved

Title: Re: Newbie here!
Post by aprilbee on Jun 1^st, 2006, 5:28pm

Welcome home!

Title: Re: Newbie here!
Post by Guiseppi on Jun 1^st, 2006, 6:27pm

And my knees just buckled to see another parrot head pop up here! Happy to have you on board. Remember, if the phone doesn't ring, it's me.

Guiseppi

Title: Re: Newbie here!
Post by Capt_Deb on Jun 2^nd, 2006, 11:39am

Hi Gang!
Guiseppi- you a PH? I've been one since forever, since I usta live in the Virgin Islands! You know a guy named Bill W?
Still on the Indomethacine trial to sort out my diagnosis --one week now. Still waking up with low grade headache and don't know if it's the Indocrap wearing off or not responding. My case scenario is to get the headache when I wake up or late evening. Had my first dose of extended release last night and woke up with a real banger. I almost hope I don't have Indo-responsive headaches cuz it's the worst med I've ever been on! Non-stop tummy ache unless I eat continuously and I've gained 8 lbs in 4 days--mostly water retention. >:(

Isn't it amazing that I learn more about my health from the internet than from my own docs? They think we won't understand why they put us on the meds they do. Mine never mentioned clusters, even tho he put me on Verapamil and Topomax. If this Indo doesn't work , the next step is headache specialist at UNC Chapel Hill.

Thanks for all you responses to my post!
Capt Deb 8)